Fibromuscular Dysplasia Society Of America Inc

FMDSA IS A PUBLIC HEALTH CHARITY WORKING TOWARDS BETTER DIAGNOSIS AND TREATMENT OF FIBROMUSCULAR DISPLASIA (FMD). WE DO THIS BY BUILDING AWARENESS OF FMD, FUNDING RESEARCH ACTIVITIES, PROVIDING PATIENT SUPPORT, AND EDUCATING PATIENTS AND THE HEALTHCARE COMMUNITY.

PATIENT REGISTRY: IN 2007, THE FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA (FMDSA) BEGAN A DATA REGISTRY WITH THE GOAL OF INCREASING UNDERSTANDING OF FMD. THE GOALS OF THIS REGISTRY ARE TO IDENTIFY PATIENT CHARACTERISTICS ASSOCIATED WITH FMD, POTENTIAL MARKERS OF THE DISEASE, AND COMMONLY USED IMAGING AND TREATMENT MODALITIES. THE MICHIGAN CLINICAL OUTCOMES RESEARCH AND REPORTING PROGRAM IS THE COORDINATING CENTER FOR THE REGISTRY. OVER THE PAST YEAR ENROLLMENT SLOWED DUE TO THE PANDEMIC. WE ENDED THE YEAR WITH OVER 3,750 PARTICIPANTS IN THE REGISTRY.RESEARCHERS HAVE IDENTIFIED GENETIC VARIANTS THAT ARE ASSOCIATED WITH FMD. THE GENES PHARCTR1, ATP281, LRP1, AND LIMA1. IN 2022, OTTOWA HOSPITAL IN ONTARIO CANADA BECAME OUR FIRST INTERNATIONAL CENTER AND FOR THIS REASON THE NAME OF THE REGISTRY WAS CHANGED TO THE NORTH AMERICAN REGISTRY FOR FIBROMUSCULAR DYSPLASIA.

PATIENT SUPPORT:PATIENT SUPPORT IS A LARGE PROGRAM, DUE TO THE INCREASE IN PATIENTS DIAGNOSED WITH FMD. DUE TO THE DEMAND, WE HAVE CONTINUED TO GROW THE VOLUNTEER SUPPORT NETWORK. THESE VOLUNTEERS HAVE BEEN IDENTIFIED IN THE US AND INTERNATIONALLY. MANY GROUPS HAVE EVOLVED TO THE POINT OF HOLDING LOCAL MEETINGS. WE ALSO OFFER SUPPORT THROUGH SOCIAL MEDIA PLATFORMS INCLUDING INSPIRE, INSTAGRAM AND FACEBOOK WHERE WE HAVE THOUSANDS OF PATIENTS PARTICIPATING. WE ARE ALSO ACTIVE ON TWITTER ALLOWING PATIENTS, CLINICIANS AND PHYSICIANS TO COMMUNICATE. WE CONTINUE TO ADD FMD MATERIALS AND VIDEOS TO OUR WEBSITE AND YOUTUBE CHANNEL WE OFFER FMD MATERIALS IN SPANISH AND JAPANESE AND WORK WITH OUR INTERNATIONAL COLLEAGUES WHO OFFER MATERIALS IN MANY LANGUAGES. FINALLY, FMDSA CONTINUE TO HOST AND PARTICIPATE IN PATIENT MEETINGS BUT DUE TO THE PANDEMIC THESE MEETINGS HAVE BEEN VIA ZOOM. PATIENTS GLOBALLY ARE INVITED TO PARTICIPATE.

PUBLIC AWARENESS PROGRAM:THIS PROGRAM WAS INITIATED IN JULY 2005 AS A GRASS ROOTS AWARENESS PROGRAM. WE HELP PATIENTS EDUCATE THEIR FAMILY, FRIENDS AND HEALTHCARE PROVIDERS ABOUT FMD WITH WRITTEN MATERIALS AND VIDEOS. WE HAVE MANY VALUABLE RESOURCES ON OUR WEBSITE TO HELP COMMUNICATE FMD IN LAYMENS TERMS, INCLUDING A PUBLIC SERVICE ANNOUNCEMENT, AS WELL AS MORE IN DEPTH INFORMATION FOR PHYSICIANS THAT CAN HELP BRIDGE THE GAP AND BUILD A BETTER RELATIONSHIP BETWEEN PATIENT AND PHYSICIAN. THE PUBLIC AWARENESS PROGRAM ALSO INCLUDES EDUCATIONAL WORK WITH MEDIA OUTLETS, OTHER ORGANIZATIONS, JOURNALS, SPEAKING ENGAGEMENTS AND ARTICLES. WE ALSO OFFER LIVE ZOOM MEETINGS. THERE IS RARELY A DAY THAT GOES BY THAT WE ARE CONTACTED BY A NEWLY DIAGNOSED PATIENT. WE HAVE SEEN THE DIAGNOSIS RATE GROW IN DIRECT PROPORTION TO OUR PROGRAMS. SEE ADDITIONAL INFO ON SCHEDULE O